Nagl-Cupal Martin, Hauprich Julia
Department of Nursing Science, University of Vienna, Austria, Austria.
Health Soc Care Community. 2018 Jul;26(4):e532-e540. doi: 10.1111/hsc.12567. Epub 2018 Mar 5.
Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers' personal needs. However, knowledge and understanding are limited regarding the needs of young carers' families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles. A qualitative research approach was used to investigate the needs of young carers' families in terms of managing daily caring demands. Nine family interviews were conducted with 34 individuals including 15 young carers during spring/summer 2015 in eastern Austria. Open and axial coding procedures and constant comparison method were used to analyse the data. The findings revealed that young carers' families need to live in accordance with their inherent family logic. Family logic is generated and maintained via (i) family reciprocity that involves the natural help within the family, (ii) individual developmental space that allows family members to be perceived and act as individuals and (iii) network cooperation that offers formal and informal support and recognition from society in general. The findings contribute to understanding how families with caring children manage the caring demands of their everyday lives. The findings also indicate that formal support for families with young carers should consider the individuality of caring arrangements with respect to the holistic and personal needs and avoid stigmatising families that integrate children into caring.
在我们的社会中，承担照料责任的儿童和青少年是一个无可争议的现实。大多数这类儿童并不为公众所见，他们为慢性病患者或残疾家庭成员开展广泛的照料活动。研究文献已经积累了关于年轻照料者个人需求的全面知识体系。然而，对于年轻照料者家庭的需求，知识和理解却很有限。这些知识有助于防止儿童和青少年承担不适当的照料角色。本研究采用定性研究方法，从管理日常照料需求方面调查年轻照料者家庭的需求。2015年春/夏期间，在奥地利东部对9个家庭进行了访谈，涉及34人，其中包括15名年轻照料者。采用开放式和轴心式编码程序以及持续比较法对数据进行分析。研究结果表明，年轻照料者家庭需要按照其内在的家庭逻辑生活。家庭逻辑通过以下方式产生和维持：（i）家庭互惠，包括家庭内部的自然帮助；（ii）个人发展空间，使家庭成员能够被视为个体并作为个体行事；（iii）网络合作，提供来自社会总体的正式和非正式支持与认可。这些研究结果有助于理解有照料子女的家庭如何管理日常生活中的照料需求。研究结果还表明，对有年轻照料者家庭的正式支持应考虑到照料安排的个体性，以满足整体和个人需求，并避免给让孩子参与照料的家庭贴上污名化标签。
